As we wrap up melanoma awareness month this May with sunshine filled plans for the summer ahead, can we please, PLEASE stop with all the half truths and mis-information about the causes and prevention of melanoma?

Can we address how it’s NOT only due to UV exposure? How prevention requires much more than sunscreen? Can we please, PLEASE address its prevalence in adolescents and especially young adults? Can step beyond the obvious and dive into reality?

Perhaps it’s the journalist in me who believes in hard, cold facts.  Perhaps it’s my lot as a grieving, ticked-off parent and melanoma prevention advocate but I have had it!   Through social media, news coverage and advertising every May we are continually inundated with one prevention message; slather on the sunscreen and melanoma won’t find you. Actually, nothing is further from the truth! While exposure to the sun’s UVA/UVB rays is the MOST common cause of skin cancers and melanoma, it is NOT  the ONLY cause. 

Did you know genetics and hormonal changes related to hypothyroidism, pregnancy and puberty can prompt development of melanoma?  Should you draw the unlucky gene or hormonal card, all the sunscreen in the world won’t stop the beast; but routine skin screenings can. If a problematic mole is removed at the very earliest stages there is a 98% chance of surviving past five years. But as the Melanoma Research Alliance reports should the melanoma reach a higher stage and spread internally through the body, the five year survival rate drops to less than 25%

Last I checked, all humans have skin. I’d say that’s well worth 15 minutes in a paper gown.

The Skin Cancer Foundation reports skin cancer is the most common cancer worldwide. It is also one of the most treatable cancers if it is detected early.  So why is there such an orchestrated pushback against routine skin screenings in the United States whereas in countries such as Australia and New Zealand it is as routine as a dental appointment? 

Perhaps because in the U.S., melanoma is not given its due among serious cancers.

Consider recommendations from the U.S. Preventive Services Task Force which every Spring, releases a report on the effectiveness and need of skin screenings for melanoma and other skin cancers. It’s important to note, the USPSTF, according to their website, is a collection of “16 nationally recognized experts in prevention, evidence-based medicine, and primary care. Their fields of practice and expertise include behavioral health, family medicine, geriatrics, internal medicine, pediatrics, obstetrics and gynecology, and nursing.”  Note not one is a dermatologist. Not one. Additionally, physicians in primary care and these other specialties are not exposed to dermatology as part of routine medical training. Why does that matter? Because dermatologists are the only medical professionals trained in the early detection of melanoma and other skin cancers. 

Last month, the USPSTF reinforced its earlier statement from 2016 finding inconclusive evidence as to whether or not skin screenings for those “without signs or symptoms” are effective for reducing complications or death from skin cancers or melanoma in adolescents and adults. The report concluded it was a wash; screenings could work or they could not.  Without symptoms? Really? Let’s look at this a little closer. By the time those “signs or symptoms” are noticed by the naked eye of a patient, if even noticed at all, it most likely is a problem. Add to that a 3-4 month wait for an evaluation and biopsy and a patient could be looking at a full blown case of melanoma with risk of metastasis to other organs.  If the same mole is detected in a routine screening, by a dermatologist trained in dermoscopy, the changes could be detected at the very earliest stage when it is 98% treatable, long before it has spread into the body. Yes, the patient will have a biopsy scar, but most likely no additional surgeries, drug therapies or negative impact on their life.

Even more mind-blowing is that in 2022, the USPSTF found melanoma was “over-diagnosed”. Let’s think for just a moment about that statement. How is a cancer over-diagnosed? Either you’ve got it or you don’t! The argument in that report was primary care physicians found while more patients were being diagnosed with early stage melanoma through routine screenings, fewer were dying of the disease. And that’s a problem? Isn’t survival something to cheer about? Did the USPSTF apply the same argument to preventive colon cancer, breast cancer or prostate cancer screenings which are much more invasive and costly? Of course not! It supports routine screening for these cancers because without question early detection of polyps, atypical moles and tumors is essential to beating all cancers.

These statements from the USPSTF complicates an already muddled message in melanoma prevention and adds to a broken system which claims lives daily such as that of my 17 year old daughter Claire Wagonhurst.

Our Claire was a beautiful 14 year old athlete and artist just beginning high school when we noticed unusual changes to a mole. She was sun safe and had been screened six months earlier by a dermatologist, but this was something new.  Despite our urgency to have the changing mole removed we faced a three month wait with the promise that “kids don’t get melanoma”. Surprise! Yes they do! Because melanomas are more aggressive and invasive in young people, it had quickly surged to stage 3a at removal.  We were blindsided even more so when we learned Claire’s melanoma had nothing to do with the sun. 

Ultimately, Claire was diagnosed with adolescent melanoma. The short version is this; hormonal changes related to puberty caused her melanoma. The longer version; routine hormonal changes in puberty prompted the development of hypothyroidism in her body which produced excess levels of TSH hormone. Add to that she had an extreme TSH hormone receptor in a mole that had been on her ankle since birth. A research oncologist at MD Anderson found that in Claire’s case, the two components meshed to develop melanoma. Subsequently during the course of her diagnosis, every time her TSH levels became elevated, another mole would be found to be rapidly changing and need to be removed. The best preventive treatment;  routine screenings every 3 months to remove any atypical moles before melanoma could set in in addition to ongoing sun safe practices.  We just accepted it as a chronic condition of her life. Sadly, it became much, much more. 

While living a full teenaged existence, Claire waged a three year battle of surgeries, hospitalized drug therapies and recovery therapies against what turned out to be an ultimate death sentence. All her pain, anxiety and loss would have been negated had the mole simply been biopsied and removed months earlier as we requested. If the medical profession had been fully educated about melanoma in young people. If, If, If!  The system failed our darling daughter and she isn’t alone.

The Skin Cancer Foundation reports melanoma is the most common cancer in young adults under 30,  the most common cause of cancer death in young women 25-30 years and the second most common cancer in adolescents 13 to 19 years. 

Melanoma in young people is said to be at “epidemic” proportions with diagnosis up 253% in the last 40 years.  Additionally, young people do not get the more treatable basal cell or squamous cell skin cancers;  they only get the nasty, deadly variety; melanoma.

At the Claire Marie Foundation, we share awareness information, prevention education and host free skin screening events for adolescents in young adults in Maryland and South Carolina. Since 2016, we have screened 1,440 young people 13-29 years, finding 16% needed biopsy for suspicion of melanoma. In many cases, early stage melanomas were detected, zapped before further treatment was needed.  So please, do not tell me routine skin screenings do not save lives. I’ve witnessed the victories and I have suffered the loss.

So how about this? Instead of ignoring the need for screenings due to lack of access,  let’s fix our broken system.  We need general practitioners such as those in the  USPSTF to follow the lead of other nations by including dermatology in their training and become skilled in the screening process of dermascopy.  By joining dermatologists in this expertise entirely new pathways to screenings and early detection would be created. Getting a skin screening could become as easy as a visit to the dentist. Wouldn’t that be amazing?

  Remember, if you’ve got skin, you could get melanoma. Know all the facts and take every precaution. That life you save could be your own or someone you love. #livelifelikeclaire

They put their lives at risk to defend our nation and trust the U.S. Government will provide for their health and well being along the way.  As we honor Veterans and those currently serving in our Military, let’s take a moment to consider an unexpected risk they did not sign up for; death from melanoma and other skin cancers. 

Melanoma diagnosis is on the rise both among veterans and in active duty service personnel. The numbers are especially high among young people currently serving in the Navy, Marines and Air Force. Those who serve as pilots have the highest rate of diagnosis. 

It’s such a problem that the U.S. Department of Defense has targeted and directed 40 million dollars to melanoma research for Fiscal Year 2022.  Why is military personnel, both past and present, at an accelerated for melanoma? Consider this:

Active military are exposed to extensive and dangerous levels of UV radiation while flying in the air, deployed on ships and assigned to remote harsh environments such as deserts. Sunscreen and UPF 50 clothing are not routinely available nor are annual skin screenings through trained dermatologists.  Add to that years in service, and it is no surprise that so much money needs to be poured into treating melanoma and other skin cancers among our military. 

Here’s a thought; wouldn’t melanoma prevention be a better solution; both in terms of life and economics?  After all, melanoma is one of the most preventable of cancers. 

Prevention is as simple as establishing sun safe education training, providing and distributing ample amounts of sunscreen, incorporating the use of UPF 50 materials in U.S. Military uniforms and off duty attire, and most importantly making routine dermatological skin screenings part of annual military health checks. 

The brave men and women defending our country have enough to worry about. Let’s take melanoma and skin cancers off their plate. 

Interested in learning more? Here’s some insight. 

https://www.skincancer.org/blog/skin-cancer-risk-military/

Bright Lights! Big City! On August 17th, CMF lit up Times Square in New York City with plenty of Claire Coral! The Claire Marie Foundation was one of a handful of nonprofits featured in Times Square as part of  National NonProfit Day! Our :15 second commercial ran 100 times in 6 hours – with 1.5 million impressions and thousands of people reached! That doesn’t even count our social media impact!

 Raising awareness of adolescent and young adult melanoma with the knowledge it can be prevented is the heart of CMF’s mission. We can’t imagine a better way to do it! Co-Founder CEO and Claire’s Mom, Marianne Banister, was joined in the big reveal by Claire Marie Board Members, Jaqueline Smith and Julianne Kavoussi as well as Young Professional Ambassadors Sarah Emrich, Becky Kavoussi and Collegiate Ambassadors Molly Sharpe and Anna Sharpe.

The event was especially meaningful for Claire’s mom.  “Claire would be SO excited!  She absolutely loved the energy and excitement of New York!  She had so many happy adventures while visiting the city with her sister Hillary and friends. We can only imagine how excited she would be to see the impact of her legacy in Times Square – spreading so much awareness  and hope in the fight against adolescent and young adult melanoma.”

We cannot say it enough! Make sure you are screened annually for melanoma and other skin cancers. It is essential to nip melanoma in the bud, halting its ability to move through your body and threaten your life. But who does the screening and how they screen can make all the difference.  Here’s some tips to keep in mind!

Rule #1: Skip Your Primary Care Physician

Surprise! Pediatricians and General Practitioners do not routinely study dermatology in their medical preparation. That means they are not trained to detect skin cancer and melanoma at its earliest point of origin. The result; melanoma is often overlooked or misdiagnosed at the earliest stage when it is most highly treatable – especially in young people.

Rule #2: Find the Right Dermatologist

Before you book your neighbor’s favorite dermatologist, listen to this: not all dermatologists are equally trained nor have equal focus. Some specialize more in the aesthetic and cosmetic care of the skin. Others offer greater attention to the disease aspects of the skin. Then there are those who are equally balanced in both specialties. Do your homework before making an appointment. Sometimes you can get faster access by booking a screening with a Dermatological Physicians Assistant who has been trained specifically in dermoscopy to screen for melanoma. It’s all a matter of a dermatologists training, focus and expertise – and your ability to find the right person for you.

Rule #3: Advocate For Yourself!

Ask a few questions and make sure you are scheduling an appointment with a dermatologist who meets the Gold Standard of skin screening. This is no time to be shy! You should ask about their screening procedures and expect the following:

• The dermatologist will put you into a gown and do a full body check for moles and any lesions. That includes the feet, nails, head and genital areas. If a dermatologist suggests you don’t need a full body screening because you are “too young for melanoma”- find a new dermatologist

• Make sure the dermatologist uses dermoscopy. It is a screening technique that uses skin surface microscopy. It can also be called epiluminoscopy and epiluminescent microscopy. It allows the dermatologist to look into the layers, color patterns and changes deep within the mole, rather than just glancing at the surface.  If a dermatologist wants to evaluate your moles with only their naked eye rather than use a dermatoscope – find a new dermatologist.

Rule #4: What If Something Is Found On My Skin?

Finding an atypical or precancerous mole doesn’t mean you have melanoma. But, it does mean something is changing on a cellular level. Since melanoma in adolescents and young adults is more aggressive and more invasive than in the older adult population – it should always be considered a victory to have an atypical mole removed and evaluated before it can evolve further. Remember: Remove the mole – Remove the risk. 

• If a mole is found to be questionable, the dermatologist will determine if it should be removed for biopsy or if it should be watched. The appropriate time period for “watching” is three months.  You should also keep a close eye on the mole in question and look for any other changes in your skin. Don’t hesitate to call if something evolves and changes before the scheduled follow-up appointment. And keep that appointment!

• Many dermatologists will photograph moles they want to keep an eye on to best detect any change. Still others may recommend “mole-mapping” technology in families at high risk for the disease. This involves full body photography. 

So in answer to your question – who do I call? Here’s a few names for those in the Mid-Atlantic area and South Carolina. 

Listed below are the amazing ‘Gold Standard” dermatologists who dedicate their time and expertise to the Claire Marie Free Screening Program and meet the highest standards of care.  All are listed in alphabetical order in the two cities we serve as of Fall 2022.   Many are part of the renown teams at Johns Hopkins Dermatology, Simmons-O’Brien & Orlinsky, Belcara Health,  Germain Dermatology, Maryland Dermatology, Skin & Vein, SCSPhysicians, Mercy Medical Center or University of Maryland Upper Chesapeake Hospital. Others are in Private Practice, and extremely attentive to their patient’s care. We are honored, privileged and so very grateful to have them join us in our mission to save young lives. 

Baltimore, Maryland

• Dr. Melanie Adams, M.D
• Dr. Karen Beasley, M.D., F.A.A.D
• Dr. Nicola Bravo, M.D.
• Dr. Sarah Cannon, M.D.
• Dr. Bernard Cohen, M.D. 
• Dr. Sherry Cohen, M.D.
• Dr. Jennifer Cooper, M.D.
• Dr. Meg Gerstenblith, M.D.
• Dr. Anna Grossberg, M.D.
• Dr. Christian Halvorsen, M.D.
• Dr. Sarah Hsu, M.D.
• Dr. Dennis Kurgansky, M.D.
• Dr. Onah Lauring, M.D.
• Dr. Mark Lowitt, M.D.
• Dr. Vadim Gushchin, M.D.
• Dr. Stanley Miller, M.D.
• Dr. Diane Orlinsky, M.D. F.A.A.D
• Dr. Rachel Schleicher, M.D.
• Dr. Amie Sessa, M.D.
• Dr. Eva Simmons – O’Brien, M.D., F.A.A.D
• Dr. Saif Syed, M.D.
• Dr. Zain Syed, M.D.
• Dr. Samantha Vincent, M.D.
• Dr. Margaret Weiss, M.D., F.A.A.D.
• Dr. Robert Weiss, M.D., F.A.A.D
• Dr. Sean Wu, M.D.

Charleston, S.C. 

Germain Dermatology

• Dr. Marguerite Germain, M.D.
• Dr.Joshua Black, M.D.
• Louisa Floyd, PA-C
• Dr. Emily Kmetz, M.D.
• Lainey O’Donnell, PA-C

Congratulations to Brigitte Gendron, the 2022 Recipient of the Claire Marie Scholarship in Arts & Design!

The Notre Dame Preparatory Senior will begin her design studies at Fordham this Fall! Once she gets unpacked and settled, Brigitte is excited to immerse herself in the study of Visual and Concept Arts.  Her dream is to channel all her passion and love of design into a career in the entertainment industry;  in film, television or game design. 

 Every year since 2015, the $5,000 award is given to a graduating senior from Claire’s alma mater, Notre Dame Preparatory School in Towson Maryland to support the recipient’s desire to study design arts in college. It was a dream of Claire’s to launch a career in interior design and we are thrilled to see other young women share the same passion and excitement. Each year, our winners are selected by an exquisite team of esteemed design professionals from across the country! They bring expertise in fine arts, theatrical, animation, interiors, fashion, photography and film. Our thanks to our CMF Scholarship Committee: Katie Fico with Walt Disney Animation Studio, Los Angeles based Interior Designer Stacey Vuduris, Theatrical Designer Timothy Swiss of Los Angeles, Photographer Susannah Dowell of Colorado, Muralist and Freelance Artist Katherine Boggs of Atlanta and Couture Designer Ella Pritsker of Maryland.

Brigitte joins past recipients who have studied in Claire’s memory at University of Ohio at Miami, University of Southern California, Rollins College, University of Virginia ,Savannah College of Arts & Design and University of Maryland Baltimore County. 

Brigitte, all the best in your academic and professional adventures! We can’t wait to see the magic you create to brighten the world!